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submitted 9 months ago* (last edited 9 months ago) by FlyingSquid@lemmy.world to c/casualconversation@lemmy.world

Before I begin- Again, please no medical advice or suggestions. I am going to the Mayo Clinic in March and I will get their advice and I am just going to ignore any medical advice posted, sorry. Please no pity party either, I'm just angry and need a a place to rant and vent, that's it. Feel free to ignore this post and move on.

So... starting in about January of 2023, I started dry heaving almost every morning and this has happened ever since. Nothing has ever come up. Within five minutes of getting up in the morning, I dry heave. Sometimes once, but sometimes a few times.

In March, I stopped eating for six weeks. It's not like I'm too nauseated to eat or I feel too full to eat, I just do not want to eat. Period. I've explained it to others like this- would you be able to eat a turd? No. That's how all solid food feels like to me. I can't even force myself. It's a total aversion to food. Even the smells of food can trigger it, especially savory smells like onions, cooked meat or cheese (meaning I hide in my office in the garage when my wife and daughter have pizza). My current doctor has described it as anorexia but with a physical cause.

I went to urgent care, they told me to go to the ER because they couldn't give me the diagnostics I would need. I went to the ER. They gave me X-rays, they took labs, and they did a couple of other tests I can't remember now and sent it all to my doctor (who I've since gotten rid of because she was worthless). She told me there were no results, but to be sure I also needed a CT scan, and my insurance wouldn't let me go to a private facility, so my only option to get it quickly was to go back to the ER the next day and get one. Incidentally, the first day was an 8-hour visit and the second day was a 6-hour visit. Hooray American healthcare system.

I got prescribed various anti-nausea medications, which were of no help because I had no nausea. I ended up living on Ensure and Gatorade.

Anyway, by mid-April, I was eating again. It just suddenly happened. I felt like eating, ate some crackers, and I was fine with an appetite again. I still heaved every day, but I was fine.

I also had to do a colonoscopy the next month, and just to be sure, I scheduled an EGD where they check your stomach as well. They found an ulcer. Finally, an answer! Nope. They did another EGD six weeks later, the ulcer was gone and I was still heaving.

No one knew what was wrong, of course, but it seemed less urgent. I scheduled a bunch of tests and, since this is the U.S., they were scheduled for months later and the summer started.

Then, in August, on the morning of August 20th, it all changed. I got up, ate some cereal, and that was the last thing I ever ate so far.

Back to the doctors it was! This time, I got a head MRI in case it was neurological, as I do have a rare nerve disorder as well (trigeminal neuralgia) because I won the fucking genetic lottery. Nope, MRI showed nothing. My neurologist actually said my brain was the most healthy she'd seen in a while. So that didn't work.

I couldn't keep taking time off of work, so I took FMLA, a law that allows you to take up to 12 weeks off, unpaid, for health reasons and have a guaranteed job you could come back to. It is actually paid for bigger companies, but if a company has under 50 employees, which mine did, no pay.

12 weeks went by and I just had to end up quitting. What else could I do? I was glad because I hated that job and I was able to put my very bullied daughter into online school and supervise her, so there were good sides, but we're down to a single income now with ever-mounting medical debt despite having "good" insurance.

Anyway, back to the medical situation! I had a HIDA scan. That tests for gallbladder issues. The HIDA scan suggested that might be a problem. So, again, hey, a solution! I had my gallbladder out just before Christmas. It's a simple surgery and you can recover from it with almost no trouble because the gallbladder can be removed like the appendix. I was hoping I'd wake up hungry. No such luck and my gallbladder was healthy.

At this point, most of the doctors basically threw up their hands and said they didn't know what to do and I applied to go to the Mayo Clinic. For those of you unfamiliar, it's one of the best hospitals in the country and it specializes in cases no one can figure out. Sort of a real-life House situation except with lots of doctors instead of one asshole. They accepted me and I go on March 22nd. I was going to have to do a GoFundMe for the trip, but my 81-year-old mother, who is relatively well-off, said she would go with me to be an advocate and take notes and also pay for an AirBnB. I don't really want to drive 8 hours up to Minnesota with a semi-crazy old lady, but at least I'm saving money.

Obviously, it's been very hard on my family. On top of general worrying about me, I can't go out to eat with my wife and daughter because I'm concerned I won't be able to handle a restaurant's smell. I can't even get them fast food. My daughter wanted a meatball sub and I had to tell her I couldn't get it for her because I couldn't handle going inside and I couldn't handle the smell as she drove it home (my wife got it for her later, but I hate telling her I can't get her food). On top of that, I have to request they turn the kitchen fan on when they eat or I won't be able to come back into the house. I usually go to my mother-in-laws' house on Christmas, but I couldn't because there would be a whole bunch of food there.

I wish I could eat. So badly. For so many reasons. I keep seeing food ads and think of how good it would be to have them (in an abstract sense, I wouldn't be able to eat them if they were in front of me). A Nepali restaurant opened in town. I have never had Nepali food, but I love Indian food and I love Tibetan food and Nepal is between them. I drive by it all the time wishing I could have just a tiny bit.

The weirdest part? I feel fine almost all the time. I have very little energy obviously (I do try to exercise), and there's the heaving part, but I don't really feel sick most of the time. Also, I can brag that for the first time in my life I'm just 5 pounds above my BMI ideal weight of 180 pounds. Before I got sick, I weighed 260 pounds. Also, I don't have high cholesterol or high blood pressure anymore, so I guess there's a silver lining? Buying a whole bunch of new pants because none of the old ones fit anymore kind of sucked though.

Anyway, that's my story. It's six months since I've eaten today. My "diet" consists of- Tea in the morning, Ensure four times a day for the nutrition, Gatorade twice a day for the electrolytes, V8 twice a day for the fiber (I have to drink it while holding my nose), and as a treat, either root beer at home or a chai latte out somewhere. Also, I might have gotten the order of things wrong, sorry. There's been so much that I've had to go through.

Six months. I'm going to celebrate by not eating some cake.

Edit: Hooray having a terrible memory too, my mother reminded me this morning that I go on March 26th.

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[-] kellyaster@lemmy.world 6 points 9 months ago

Hey Squid. I'm sorry I missed this post. I'm glad you are gonna get treatment at Mayo, and I'm also glad to see you're asserting an "I need support, not advice" boundary. It's inspiring, as I'm trying to do that for myself right now... because JFC, hearing proposed solutions is exhausting when what you really need is someone to listen and empathize. I'm just now realizing people cannot read my mind, so I guess I gotta be direct.

I wish you the best, man. DM me any time you need to vent, even if it's just a quick "argh dammit this sucks!" I won't ever recommend Vitamin F supplements or whatever

[-] FlyingSquid@lemmy.world 5 points 9 months ago

Thanks, I really appreciate it. It sounds like you need some solutions yourself, so I hope you get them.

[-] mlg@lemmy.world 5 points 9 months ago

Is that FMLA why you've been posting up to 8 times daily? Cuz I see you everywhere on lemmy lol

[-] SnotFlickerman@lemmy.blahaj.zone 5 points 9 months ago

All I can say is I'm sorry you're going through all this and the pressure it has put on you and your family.

I really hope you're able to nail down the source of this, having an "unknown malady" is the worst, I've been through it at least three times with my partner where each time it took literally years for doctors to figure out what was happening. It can take a lot of time, but if you keep reaching out to specialists, and you keep ruling out things it isn't, eventually you'll find something that works.

Coming from someone else struggling with their and their families health: I wish you and your family nothing but the best, and I sincerely that you either find a solution or a manageable way to cope.

[-] FlyingSquid@lemmy.world 4 points 9 months ago

Three times? Damn. I've gone through it twice now and that's been really awful too. I hope you and your families' health do better soon.

[-] SoleInvictus@lemmy.world 4 points 9 months ago* (last edited 9 months ago)

It took me a second to figure out if you're my wife or not as that's exactly my story too. It's depressing how frequently I encounter people, typically Americans, that took years or even decades to get a diagnosis. My issues started around the age of 5 and I didn't get a diagnosis until 31 years and literally dozens of doctors later.

The doctor that diagnosed me didn't know how to handle it or who to send me to. It took nearly a year to find a doctor who was willing to even try to help. Even with a helpful doctor, I still had to piece together an effective treatment plan myself through trial and error plus a ton of literature review.

[-] tygerprints@kbin.social 5 points 9 months ago* (last edited 9 months ago)

Well that sounds pretty miserable all right. I went through something similar when i had hepatitis and wondered why i craved food but didn't actually want to eat it once I went through the trouble of making it, but if that's what you have they would have detected it much earlier than this.

At least you're getting nutrition from your nutritional drinks and Gatorade. For people with gastric conditions that's usually the route that is prescribed. It's a rotten thing to have to go through but I wish you the best going forward with this.

[-] FlyingSquid@lemmy.world 4 points 9 months ago

Interesting. I had both mono and hep A at the same time when I was a teenager (apparently not uncommon). But I don't remember not being able to eat. And yeah, Gatorade is definitely important. Which sucks because I hate how sweet it is.

[-] ProdigalFrog@slrpnk.net 5 points 9 months ago

You might be able to replace the Gatorade with Morton's lite salt added to your flavored drink mix of choice (I personally buy True Citrus drink mix powder in bulk 500 pack boxes, since it's cheap, has no bad ingredients, and has no added sugar, so you can sweeten it yourself).

There are guides online that describe how much Morton's lite salt to use to equal Gatorade.

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[-] ArbitraryValue@sh.itjust.works 5 points 9 months ago* (last edited 9 months ago)

A few years ago I went to the Mayo Clinic in December (not as a patient) and it was in the coldest place I have ever been. I say that as someone from a place with a relatively cold climate. I guess it won't be as cold in March but bring warm clothing.

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[-] subignition@kbin.social 4 points 9 months ago

Yeah, sounds like you are a real life zebra. I'm hopeful that you can get some answers. Looking forward to a future post celebrating them.

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[-] SoleInvictus@lemmy.world 4 points 9 months ago

As someone also with a largely mysterious, if diagnosed, medical condition, have you tried meditation?

Just kidding! I get tons of well meaning, often worthless advice, but that's by far the most common. I'm like, bitch, I meditate so goddamn much I'm giving the fucking Buddha pointers. Meditation is the only reason I'm not throwing you (and maybe myself with you) out the window right now.

If I may give you one non-medical suggestion from someone who has been there and to some extent still is there, it'll get better as long as you don't give up. You have to be dogged about improvement and it won't be fast or easy, but it'll be there if you put in the work. People who don't understand will think you're being crazy and obsessive, telling you that you need to just come to terms with your condition. Coming to terms is a part of it, but there's always, always something to try. Improving my condition is my biggest hobby and primary job.

I've been plugging away at improving my health for four years now and went from barely being able to function to being 80% normal. I'm working full time again (I know, oh joy) and I can do a lot of the things I used to be able to do. You'll get there, just keep at it. Let me know if I can help or if you ever need to talk, even just to vent.

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[-] Ludrol@szmer.info 4 points 9 months ago

This seems awful. Life sometimes is like that. I will pray for your wellbeing and wish you luck.

Quick question: Does smell of food itself make that reaction? Something like beacon candle.

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this post was submitted on 20 Feb 2024
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